“Living With and Beyond” the Terms “Patient" and “Survivor”: A Lived Experience Discussion of Terms Used by Young Adults With Cancer

Objectives

This paper explores the contexts and acceptability of common and emerging terms used to refer to oneself when facing cancer, including “patient,” “survivor,” and the newer terms “living with and beyond” and “lived experience.”

Methods

The discussion is informed by social identity theory, literature review, advocacy work, and lived cancer experience from the authors.

Results

The term “patient” is recognized for its semantic relevance and widespread usage, but also its limitations for those with chronic or metastatic cancers, and people post-treatment. “Survivor” has similar prevalence and is noted for its community-driven emergence, however it lacks consensus on its qualifying definition and invokes “struggle language” which is not readily accepted by all. These two terms are contrasted with the more recent “lived experience” and “living with and beyond” phrasing seen in America and Western Europe. These terms map onto a larger variety of individual cancer experiences and recognize the agency of the individual. However, these terms are limited by their lack of clear translation into other languages and their comparatively complex phrasing.

Conclusion

It is recognized that heterogeneity in patient preference for social identity-based terms in cancer will persist, but as professionals, there is a duty to acknowledge and support the development of new terms for self-identification within the cancer community, especially when it presents a potential for improved autonomy, agency, and individuality.

Implications for Nursing Practice

Nurses play an important role in supporting psychological wellbeing of people with a lived cancer experience which can be facilitated through individualized approaches to cancer-specific social identity terms.